Timetable Entocort tapering

[Lilja]

Hi all,

I started 3 mg Entocort 12 days ago. I have 88 tablets left.

I’m trying to set up a timetable where I would take 1 tablet each day for a period of time, and then taper down by for instance taking 1 tablet every other day for a period, then 1 tablet every third day, and so forth.

I am not terribly good at math, so I’m struggling as to how I should set up a timetable!

Let’s say I take 1 tablet each day for 1 month = 30 tablets.

Then I want to spread the remaining 58 tablets over let’s say 6 months as mentioned above, so I’m trying to figure out how long each tapering-period should be.

Maybe the 30 day period with 1 tablet each day is too short?

Should I just divide the 58 tablets in 4 boxes and write the intervals on the box?

I would love some advice as to how I should do this in a smart way


Grateful for all input!

Lilja

[nerdhume]

I have not tried Entocort, but I would suggest you decide to taper based on your MC symptoms. Also, it will be good to have some pills left so you can stop a flare later on if you need to.

[tex]

Lilja,

You started with 100 capsules.

If you want to take 1 capsule per day for 30 days, then this would use up 30 capsules.

But if you want to take 1 capsule per day for a total of 42 days, then this would use 42 capsules.

1 capsule every other day would take 15 capsules in 30 days, or 21 capsules in 42 days.

1 capsule every third day would take 10 capsules in 30 days, or 14 capsules in 42 days.

1 capsule every fourth day would take 8 capsules in 32 days, or 11 capsules in 44 days.

1 capsule every fifth day would take 6 capsules in 30 days, or 9 capsules in 45 days.

So if you use 30-day periods for each level, then the treatment would last for 5 months (But this would require that you would only use 1 capsule per day for 18 more days, since you are already 12 days into the treatment). And you would have 41 capsules remaining at the end of the treatment regimen.

If you use 42-day periods, then you would use 1 capsule per day for 30 more days, and then spend 42 days at each of the other treatment levels. In this scenario, the total treatment regimen would last for 7 months, and you would have 3 capsules remaining at the end of the treatment.

Tex

[Lilja]

Lilja,

If you use 42-day periods, then you would use 1 capsule per day for 30 more days, and then spend 42 days at each of the other treatment levels. In this scenario, the total treatment regimen would last for 7 months, and you would have 3 capsules remaining at the end of the treatment.

Tex

Thank you, Tex, that is very kind of you!
7 months is a long time, but since the last Entocort ended with me having D 16 days after I went off the 100 capsules, maybe I should go for 7 months. Good thing I have some more days to reflect on this

Lilja

[tex]

Lilja,

You might want to use some sort of combination of those 2 plans in order to be more flexible for meeting your needs. You would wind up with a few more capsules left over (in case you needed them at some point in the future). For example, if you stayed at each level for 36 days, you would have 18 capsules left over, and the treatment would last for exactly 6 months.

But if you wanted to stay at certain stages longer (or not as long), you could also do that, as long as you didn't stay too long on the first stage or 2 too long and use up too many of the pills.

You're very welcome,
Tex

[Gabes-Apg]

Lilja

it is always good to 'have a plan' to work to. Albeit we are all very very different and plans dont always work!
In line with Theresa's comments, the main thing is to listen to your body and be ready to make adjustments based on what your body is telling you.

Some stay on the meds for a longer period, and some realise that entocort is not the right med for them and change... there are some here that hav tried 3-4 different meds before they found the one that suited them best. my suggestion is to research Plan B, and Plan C and have them ready just in case....

Good luck with Plan A!

[Leah]

I have a couple questions.
1. Why do you only have 100 pills?Will your doctor not prescribe more? Most of us who have taken Budesonide, we start with 3 pills a day and go from there according to our symptoms.
Does one pill a day take care of your symptoms completely?

2. So, you went through this once before and relapsed after stopping?…. if that's the case, you are either on too low a dose and didn't use it long enough, OR your taper wasn't long enough, OR you are still eating something that you are reacting to. If it's food, then you will likely keep relapsing every time you get off the drug. PLUS we have seen that people who go on and off Entocort more than once seem to get less relief from it each time.

3. Have you changed your diet? Entocort only temporarily brings down the inflammation and masks food intolerances. it won't HEAL your gut.

I took 3 pills a day for one month, when I started to get a bit constipated I cut the dose and was at 2 a day for 2 months, then 1 a day for 2 more months and the last month i used to taper slowly off to it. I drastically limited my diet during that 6 month period. After three years, I'm happy to say that I have never had to take it again.

Good luck
Leah

[Lilja]

Lilja


In line with Theresa's comments, the main thing is to listen to your body and be ready to make adjustments based on what your body is telling you.

Good luck with Plan A!

The problem is that my body told me nothing when on Entocort last time (June-October this year), other than that D stopped 14 days after starting Entocort. After I had taken all the 100 capsules I stopped promptly, since no one had told me to taper down, not even my doctor. D came back 16 days after stopping Entocort.

I adjusted my diet 18 months ago; GF and DF, no soy, not too much fiber, well cooked vegetables, well cooked meat, coconut oil, magnesium baths, electrolyte drinks, rice milk.

By the way, I received the result from my tissue typing yesterday; I do not have the HLA DQ8 or HLA DQ2 genes.

My guess is that CC was due to overuse of antibiotics, which lead to leaky gut, which gave me all sorts of trouble both mentally and physically (diarrea). The mental trouble has gone, thank God.

Lilja

[Lilja]

I have a couple questions.
1. Why do you only have 100 pills?Will your doctor not prescribe more? Most of us who have taken Budesonide, we start with 3 pills a day and go from there according to our symptoms.
Does one pill a day take care of your symptoms completely?

Good luck
Leah

I think it was because my GP wanted to see if 100 capsules were enough, as a first trial.

Lilja

[Lilja]

Lilja,

You might want to use some sort of combination of those 2 plans in order to be more flexible for meeting your needs. You would wind up with a few more capsules left over (in case you needed them at some point in the future). For example, if you stayed at each level for 36 days, you would have 18 capsules left over, and the treatment would last for exactly 6 months.

But if you wanted to stay at certain stages longer (or not as long), you could also do that, as long as you didn't stay too long on the first stage or 2 too long and use up too many of the pills.

You're very welcome,
Tex

Wow, Tex, you overrate my intellectual capacity.
It's too complicated as it is with one of the plans, ho ho
Lilja

[Gabes-Apg]

Lilja
based on what you are saying if the symptoms did not improve on full dose, then you are still ingesting / having contact with triggers, ie the inflammation levels are so high that C has not started.

for most, based on experiences shared here, the time to start reducing the entocort is when you start to have C.

Its a tough road to travel, lots of luck for the journey

[Lilja]

Lilja
based on what you are saying if the symptoms did not improve on full dose, then you are still ingesting / having contact with triggers, ie the inflammation levels are so high that C has not started.

for most, based on experiences shared here, the time to start reducing the entocort is when you start to have C.

Its a tough road to travel, lots of luck for the journey

Thank you Gabes!
I don't know what more to remove from my diet.

I have already started to have "firm" (don't know the exact English word) stools. Let's hope it was the lack of tapering off that made all go wrong last time.

I have gotten rid of all other symptoms; nausea, tingling, drunkman's gait, confusion, falling out of conversations, not finding the keyhole in my door, not knowing which road to choose when visiting people I had visited 100 times before, depression, the feeling of sitting in a bubble and watching everything around me happen without being "alive" myself, afraid of seeing people in the eyes, searching for words, lower back pains, leg pains...

Lilja

[tex]

Lilja,

Yes, IMO it is very likely that your relapse was due to ending the use of Entocort abruptly, because that causes a mast cell population rebound, and mast cells cause inflammation if they become activated. It's very unlikely that you could have eliminated all those symptoms if you still had any major food sensitivities in your diet.

I believe that you will have much better results this time. If not, we'll take a closer look at your diet then, but with any luck at all, this time remission should last.

Tex

[Lilja]

Lilja,

Yes, IMO it is very likely that your relapse was due to ending the use of Entocort abruptly, because that causes a mast cell population rebound, and mast cells cause inflammation if they become activated. It's very unlikely that you could have eliminated all those symptoms if you still had any major food sensitivities in your diet.

I believe that you will have much better results this time. If not, we'll take a closer look at your diet then, but with any luck at all, this time remission should last.

Tex

Actually, if I had to choose I would choose D, because my other problems were horrific.

Yes, Tex, I hope you are right. It took 16 days after stopping Entocort last time, before D came back. If it were a diet problem, I think D should have come much sooner.

I have faith

Lilja

[tex]

If it were a diet problem, I think D should have come much sooner.

Tex